Where to begin. Adjusting to our new home routine has been a bit harder than we expected. On one hand she is actually doing fairly well. No vomiting. No pain. Which is a huge blessing! She has spurts where she wants to play game after game, do art or make brackets. Then she’ll get tired and watch a show or do something on an iPad. Then we will cycle around again and do some more games. We have definitely seen an increased appetite from her meds. This morning she ate a whole box of Mac n cheese (yes for breakfast , I know.. odd for sure) the she had 4 fried eggs. With no yoke.. one at a time. She kept asking for more. A bag of cheese puffs, an egg pizza and lots of snacks. It can be hard to keep up.

What’s hardest is you can just see it in her that she doesn’t feel 100% even though she doesn’t complain. Her belly is swollen, from all the eating I’m sure but also from the steroids. She cries when we make her take her meds (twice a day) and she just seems a little different. She use to wake up around 7 everyday and get dressed. Usually in a dress and legging before she would come out of her room and come find us. Now she rolls out of bed and refuses to get out of pjs. We persuaded her to put on her snow gear today and get a breath of fresh air. We pulled her on the sled and everything. She lasted maybe 10 minute and begged to go back inside. It’s just hard to watch as she use to have so much fire in her.

Then on the other hand we have Parker, a 4 year old boy full of non stop energy. Brad and I are doing our best to give him our attention but we have to divide and conquer a lot. We have a great support group that would love to take him for play dates and I’m sure at some point we will agree. However he was already away from us all last week. We missed him for one but we also don’t want him to feel neglected. As we get adjusted to our new norm we pray for more patience and more energy. 🙂 We will get through this. One day at a time.